Dealing with the mental and physical decline of my beloved mother

The day we have been dreading arrived unexpectedly. We recognized that mom was on the downside of that horrible dementia cycle, but it still caught us by surprise and took my breath away.

Dad called around 9:30 one Sunday evening. By the tone of his voice I knew immediately that something was very wrong. “Your mom went to bed as soon as we got home from your house. I just went to check on her and she was sitting up on my side of the bed. When I walked in she said, ‘My husband fell in the shower. I tried to help him up, but I couldn’t. Can you help him?'”

Dad, being the kind soul that he is, went into the bathroom and returned a short time later to let mom know that he had gotten her husband up. She had again pulled off her colostomy so he took her to get cleaned up. As dad was helping mom back to bed she again asked about her fallen husband, “Is my husband alright? Is he hurt?” Dad responded, “No, he’s fine. He’s not hurt.”

Dad’s voice cracked as he relayed what had just happened. His heart was breaking and so was mine.

Since that night no further instances of mom not recognizing someone close to her has occurred. For that I am thankful. But I am afraid that this was a mere glimpse of what is to come and it saddens me deeply.

Mom has dementia, that’s no secret. I inform all medical personnel that she comes in contact with – doctors, nurses, ambulance attendants, etc. And I informed Lifeline when we decided to go with their company. Lifeline, for those who are not familiar with them, is a medical alert company. If mom should fall, which she does occasionally, or if she should need help and unable to reach dad, she can push the button on the gadget she wears around her neck and Lifeline will respond. The commercial on television for Lifeline shows elderly people on the floor, pushing the button and saying, “I’ve fallen and I can’t get up”.

Mom has on occasion (more than one occasion) pushed the button while lying in bed and announced to the Lifeline attendant that she had fallen and couldn’t get up. I guess she forgets what the gadget hanging around her neck is for, starts to play with it and when a voice comes over the speaker asking if she needs help, she mimics the commercial. In the past the Lifeline employee has called dad to let him know that mom had fallen. Once dad finds mom tucked in bed he lets the Lifeline people know that all is well and no further action is needed.

So far things have worked well. I have explained to them about mom’s dementia, explained that she has delusions and hallucinations and that unfortunately these calls to them will continue. There’s really nothing we can do to stop them. They appeared to understand, purporting to put a large notice on the top of her file stating that she is a dementia patient and to always call dad or me before contacting emergency services. It has worked well for over a year, but somewhere along the way it changed.

One evening recently mom went to bed early and dad was up watching television when he heard the walkie-talkie that he keeps on the side of the bed go off. “Do you need something, Honey,” dad asked. All he heard was whispering. “What? I can’t hear you.” Mom replies a little louder, “There’s a man in the room!” “No, there’s no man in the room,” dad says as he hurriedly walks to the bedroom. He arrives in time to hear Lifeline say, “The police are on the way.”

“No, no, there’s no man here,” he tells the Lifeline operator.

“Who are you?” asks the operator.

“I’m her husband,” dad replies. “No one has broken in the house.”

“Okay, we’ll cancel the police.”

Shortly thereafter the house phone rings. It was the police. “Please step out of your front door.” My 85-year-old father steps outside and is surrounded by police, one of which is holding a flashlight in his face, and an officer with a police dog is in the backyard. After explaining the situation, he is allowed to go back inside.

The next day dad relayed what happened to me. I gave Lifeline a call to reiterate the fact that mom has dementia, has hallucinations and will at times see people who are not there and push her button. I requested again, nicely I might add, that my dad be contacted first, before emergency services are called since he lives with mom in the same house. They agreed.

A couple of days later the same scenario – mom in bed early, dad watching television when there’s a knock on the door. The ambulance attendant standing at the front door informed dad that Lifeline had contacted them stating that my mother had fallen and injured herself. Dad knew nothing about it. He found mom sitting on the toilet unable to get up. Apparently mom pushed the button and when Lifeline responded she panicked and told them that she had fallen. When asked if she was injured mom responded that she had hurt her neck. About an hour after the situation was cleared up Lifeline called me to let me know that mom had fallen, an ambulance had been called but she was fine. No call was ever made to my father.

Once again, a simple phone call to dad could have eliminated the ambulance showing up needlessly. Instead, dad will now be saddled with a hefty bill from the ambulance provider which will not be paid by Medicare or their supplement since mom did not get in the ambulance.

Again I called Lifeline and I wasn’t quite as polite as the last time. In fact, I was pretty darn irritated and some poor woman got the brunt of my irritation. I just could not understand why suddenly things had changed and emergency services were called before my father or me. A supervisor came on the line explaining “protocol”, telling me that if a client requested assistance it was “protocol” that they were required to send some type of emergency services. I again explained about the dementia that plagued mom. I again explained that this would continue to happen and a call to my father who lives in the same house with their “client” could clear up any misunderstandings. I asked when their “protocol” had changed since for the last year my father was always called first. After heated discussions I informed the supervisor that we wouldn’t be needing their services anymore. I was fortunate enough to find a local company that is more understanding and willing to work with us.

Uncle C finally did it. He took the plunge. He jumped over the edge into the darkness, into the great unknown. He had been talking about it for a couple of years, wanting it, yearning for it. The “it” being death. But yet he was scared, scared of that unknown.

Uncle C talked about death often. Daily he’d tell us that this day would probably be his last. He talked about wanting to get his hands on some sleeping pills so he could just go to sleep and not wake up. Honestly, I don’t think he would have ever done it because of the fear that plagued him.

One second Uncle C was “waiting for the hearse” and the next he was trying to talk my hubby into bribing someone at the DMV so he could get his driver’s license back. Up until the very end Uncle C held out hope of driving again, traveling to those far away places that he and his beloved had seen and loved.

Uncle C’s heart and lungs were failing, but he never believed it. To him, he still had the heart of an 18-year-old. But when the end finally came for him, Uncle C went to sleep and didn’t wake up. It was a very peaceful death. He was surrounded by people who loved him to the end – me, my hubby, my daughter and a wonderful caregiver.

We will miss the old fellow. But he had 95 terrific years of life. What more can one ask for?

So…to Uncle C I say, it was an honor and a privilege seeing you through the last few years of your life. I have learned much from you. Go forth and join your beloved wife of 70 years and find peace. I love you Uncle C.

Dad was restless and unable to sleep so was up watching tv in the living room when the phone rang at two in the morning. “Mr. L, this is Lifeline. Your wife needs some assistance. She said you were asleep in the other room with the twins.” Twins?? What twins? As far as I know we don’t have any twins in our entire family.

Dad rushed to the back of the house where he found mom. Her colostomy had a “blow out” as dad calls it and mom was in the bathroom patiently awaiting dad’s help. “Are the twins still sleeping?” Mom asked. Hesitating briefly dad responded, “Yes they are.”

Dad has grown so much on this journey through dementia with mom. It certainly has not been easy for him. It hasn’t been easy for any of us. Acceptance has been the hardest part. I think dad has finally accepted that there will be twins, there will be Martians on the roof and there will be dogs named Princess, even if they only exist in mom’s mind. He has learned many things, but the most important thing he is learning is patience.

And the most important lesson I am learning is that love and patience will get you through anything.

Mom’s cancer is back. Well let me rephrase that – it apparently has been there all along, just not big enough to be detected. It’s now in her lungs. Her oncologists said that he is sure that it was there when she struggled through the colon cancer and treatment two years ago.

The good news is that it took two years to show up on blood tests and the PET scan. The bad news is that it is in the lungs – never a good thing. There are two spots in her right lung and one in her left. Her doctor described them as small spots, the largest about the size of a nickel. I don’t know much about lung cancer, but that doesn’t sound terribly small. Pea size is small, an ant size is small – a nickel, not so much.

I suspected that they may find some type of cancer in mom since three blood tests came back with elevated levels in the cancer detecting test. Still, the diagnosis of cancer in the lungs took my breath away.

When we saw her geriatric internist a few days later and told her about the cancer, Dr. L asked mom what she thought of it. Mom simply shrugged her shoulders. Dr. L then asked mom if she was worried about it and mom replied, “No.” With a little chuckle Dr. L said, “We’ll if she’s not worried about it I guess you shouldn’t be either.” That’s great in theory, but in reality mom doesn’t really understand what it means to have lung cancer. We do. Actually, I’m pretty sure that ten minutes after she was asked the question, she didn’t even remember the conversation. She was too focused on the trip to the casino in Biloxi dad promised her. They left for Biloxi from Dr. L’s office.

Mom’s oncologist knows mom’s history. He knows about the two hip replacements, the diabetes, the colon cancer, and he knows about the dementia. He also recognizes that she will never understand what is happening to her if they should put her through radiation and chemotherapy again. It was brutal last time. For now he recommends that we take the wait and see approach, do another scan in two months and see if there is any change. If the cancer is growing quickly rather than at the slower pace that he anticipates, we will have to make some very difficult decisions.

For now all I can do is pray – pray for mom, pray for dad and pray for the strength to make the right decision when that time comes.

Tomorrow is mom’s birthday. She will be 80 years old. Mom and dad have wanted to take my daughter and granddaughter to the beignet shop for months, but since my granddaughter becomes this little sugar monster after eating too many sweets, my daughter has avoided the trip. But today in celebration of mom’s birthday she finally agreed.

All the way to the restaurant my granddaughter kept asking mom how old she was going to be. Initially mom just acted like she didn’t hear the question, but later she answered with, “Ladies don’t tell their age.”

The staff at the beignet shop know my parents well – they go there several times a week. So when the waitresses heard about mom’s birthday, they brought out a beignet with a candle in it and everyone sang. Mom happily sang along.

After the celebration a woman approached mom, wishing her a happy birthday and telling her, “My husband is deceased now, but his birthday is tomorrow too. He would have been 80.” Mom replied, “Oh, I’m not that old!”

I think mom still believes she’s 65. Hum, I think I may still be 25! :)

After yet another stay in the hospital, Uncle C’s doctor informed my husband that short of a heart/lung transplant (which they would never perform on a 94 year old), Uncle C’s condition will only worsen. Uncle C has congestive heart failure and COPD. Uncle C, of course, doesn’t believe there’s a thing wrong with his heart or lungs. In fact, he continues to tell people that he has the heart of a 17 year old and only has the pacemaker for back-up.

After hubby had a heart-to-heart talk with Uncle C this week regarding his condition, Uncle C responded with, “Well, Dr. M doesn’t think I have much time left so we better hurry and get my driver’s license back!”